My brother is 41 and I am 34. He was diagnosed with schizoaffective disorder, depressive type when I was 18 and a freshman in college.
When we were growing up, we had a decent sibling relationship. Due to our age and gender difference however, we didn’t spend a lot of time doing things together. When he reached his teens, he started to act out in ways I thought were typical teenage boy tendencies and I tried to not let it bother me. We grew up in a loving but strict home and my father’s reactions to my brother’s behaviors made me increasingly anxious over the years. My mother did her best to manage my father’s temper tantrums but never fully prevented them.
My brother had a very difficult birth. My mother was in labor with him for 48 hours and the umbilical cord was depriving him of oxygen. He was born by emergency C-section. I now know that he most likely suffered brain damage due to oxygen deprivation in addition to having a genetic predisposition to mental illness. When I was 2 and my brother was 9, my mother’s parents died in a plane crash. While I don’t consciously remember how such a loss devastated my mother, my brother had told the psychiatrist evaluating and diagnosing him years later that after the accident he felt as though he had lost our mother’s love. My grandparents’ death and the inevitable emotional fallout that ensued was the environmental component, I feel, that tipped my brother’s mental health over the edge, even though he wouldn’t begin to display intense negative symptoms until his early 20s.
Throughout his high school years, while never confirmed, my parents and I suspected my brother experimented with drugs, perhaps in order to self-medicate. It breaks my heart to think that he was suffering, perhaps hearing voices, and instead of coming to our parents, he tried to manage his symptoms on his own with substances that very well may have made his condition worse.
He got through high school and went off to college when I only saw him during holidays. Then he graduated and moved from upstate New York to Alaska where he lived for about 3.5 years. My parents kept tabs on him–calling his cell phone every few days to see how he was and wired him money to his bank account. He found odd jobs here and there, one was working at a hydroponic tomato farm, another was in the kitchen of a hotel as a dishwasher. Unfortunately, he could never keep his jobs for very long. Realizing he was unwell, he drove home to New York City and arrived at our crowded dining room table while my family entertained friends for dinner. He was pale and tired, but most alarming of all were the sentences that came out of his mouth. Disjointed. Non sensical. I remember being seized with fear, sadness and embarrassment for him, myself and my parents.
I went off to college, made friends and met a serious boyfriend. My brother was diagnosed the fall of my freshman year. Unbeknownst to me, my mother’s cousins, psychiatrists, had been discussing my brother and his behaviors for many months and helping my parents decide the best course of action. At his sickest when I was still living at home during breaks in school, he would pace the hallways at night. His hair grew long and he wore it in a ponytail down his back. I always made sure to lock my bedroom door.
Thankfully, my father’s tantrums subsided, but were replaced with deep sadness that I didn’t know how to alleviate. My parents changed their Wills, designating my mother’s cousins as my brother’s caretakers should something happen to them and they created a Special Needs Trust specifically for my brother. The beginning of my Junior year of college, 2007, my parents’ car was hit by a drunk driver. They died instantly. My life shattered. My brother’s life as he knew it shattered. Everything was in tiny, sharp shards. A new world was forced on us that we didn’t know how to navigate, alone or together.
I left school for the semester and came home. Over the course of 4 months, I slid into a deep depression. A family friend dragged me to get help and I got on a course of medication that saved my life and that I still follow to this day. My boyfriend and I became engaged. I worked hard over the spring and summer of 2008 to catch up so I could graduate on time. My fiancé and I moved to Chicago where our relationship, deformed by grief, took its last breath. I stayed in Chicago for 8 years, not wanting to move back to New York City where I lived with my parents, or where my brother still lived in our family home. I was afraid of him. Afraid of the memories the city would hold, and petrified of the shame I held inside.
My aunt, my father’s sister, learned of my brother’s debilitating illness like a sick cat crawling out of a bag. My parents had kept my brother’s diagnosis private from my father’s family to preserve his privacy. All throughout my life my father’s family had demonstrated that while some had good hearts with good intentions, they lacked the understanding and education needed to comprehend mental illness and its severity in my brother’s case. My aunt was floored, brushed aside, and vigorously racing to play catch up.
Since some time has passed now, I can look at her treatment of me with wiser eyes. I think it was her grief at losing her brother, sister-in-law, and in a very real way, her nephew that caused her to use me as her punching bag. She couldn’t fathom why my brother and I aren’t closer. She felt like I saw him as a burden. To be brutally honest, I do see him as a burden sometimes. I don’t handle his affairs or day-to-day issues, but I resent not having an older brother to look up to while we were growing up, or big open arms to fall into when I arrived home after our parents had died. We couldn’t and we can’t grieve together in the way healthy siblings would expect to, and he can’t be there to hold me when I need it most.
I’m back in New York City now after completing my MBA in the United Kingdom. A failed attempt at establishing a life on a visa forced me to leave, and I arrived at my friend’s mother’s apartment on the Upper East Side as Covid-19 forced the city into lockdown in March 2020. This past Easter Sunday, my brother showed up in front of my building, uninvited. He called and sent me emails asking if he could come in. Recovering from a hangover and sleeping Easter away as I’ve done for many years now, I ignored his call and responded to his email, saying I wasn’t expecting him, but we would get dinner soon. I’m still plagued by shame that I can’t be more for him. I’m ashamed that I don’t smile ear to ear when I see him, or jump at the opportunity to spend time with him. I’m trying to learn to give myself grace, and that I can’t expect myself to pour from a cup that’s been more or less empty since my parents’ death. I’ve been in survival mode, trying to move my life forward. I’ve been trying to figure out a career that has meaning, that gives me joy and puts a roof over my head. I’ve been trying to build romantic relationships one after the other, only to realize that I’m still broken and need more healing. I’m not ready yet. I don’t have enough good things going on in my life to balance my brother’s illness and the loss of my parents. That’s my reality.
Does anyone have any advice on how to help a sick sibling without sacrificing yourself?